What follows is a personal account of how these two factors are combining on the ground. My local civil society organisation of disabled people is under threat from brutal and misguided welfare policies. A harsh new regime has been imposed on
the long-term sick and disabled in the name of "back-to-work support". The
combination of cuts and organised harassment it entails is causing a deterioration in health, wellbeing and community cohesion for all of us, as well as financial impoverishment.As a user-led organisation, we are the micro-model of a flourishing community group: supporting each other to reduce isolation and encourage participation and a healthy lifestyle. The threat to our survival comes not so much from the estimated combined cuts to Voluntary and Community
Sector of £77 million. We are already as lean as can be; running almost
entirely on community spirit and goodwill. It comes, rather, from an assault on our personal capacity to govern our organisation; and on our members' capacity to benefit from our services.

Our little Big Society

I help to run a small charity, managed entirely by fellow user-volunteers. We are a peer support group for people with a
long term health condition (ME/CFS) doing it for ourselves. On an income of
less than £5,000 p.a. we fill some of the gaps left by the woefully inadequate NHS provision for ME/CFS. Our activities are aimed at supporting and empowering each other towards better health.

We run a
programme of therapeutic activities with proven health benefits: yoga,
meditation, qi gong and hydrotherapy, where our local NHS now offers just six
sessions of counselling for this highly debilitating and poorly understood disorder. We have an outreach team staffed entirely
by member-volunteers to offer support to all of our 160 plus membership. We produce
a quarterly newsletter sharing news, information and resources for living with our
condition. We run an email forum for housebound members to keep in touch and we
hold social events designed to reduce the terrible burden of isolation
experienced by people suffering from ME/CFS. Where low income and disability are barriers we have a
transport fund to enable members to participate. Many of our members take on
small roles of just an hour or two a month helping to co-ordinate a class, or
providing peer support by telephone, for example. This can be vital in
rebuilding their confidence, developing new skills and re-engaging socially.
Sometimes, if their health improves, it helps them return to work.

We who run the organisation should be polishing our Big
Society halos. Instead we are hiding in anonymity and living in fear. All of us
are sick ourselves. Too sick to work but so keen to gain some of the rewards of working and contributing to society that we sometimes sacrifice our own health to keep the
charity afloat. Too unwell to leave home very often, we struggle to put in a few hours’ work per week or month as
and when the fluctuating nature of the illness allows, whether from 3 - 5 am or on a
Sunday afternoon. Often we work from our beds, not as a “lifestyle choice” but
because we’re too weak to sit up. Sometimes we choose to forgo life’s
essentials like washing, cooking or phoning a family member in order to save our energy for the organisation we run. You could say energy, rather than funding, is our most valuable currency.

All of us are too scared to reveal our identity. For, with our proverbial curtains often still drawn
at noon, we embody the Coalition government’s mythical figure of hate – the
underclass of skivers and scroungers said idling on benefits at the expense
of our hardworking neighbours.We have become The Suspected. Any evidence of sentient activity is likely to have us pronounced "fit to work" and all our benefits removed. Our sense of persecution may sound overblown in a 21st century Western democracy. But life for a sick or disabled person right now has a Kafkaesque quality.The government said in 2010 that genuinely sick and disabled people had nothing to fear from the welfare reforms and that the vulnerable would be protected. Yet over this Parliament's lifetime £9 billion will have been taken from disability benefits. That could be more than they take back from the banks.This reality of these targeted cuts has not reached mainstream political discourse because the government refuses to carry out an assessment of the cumulative impact of all its austerity policies on disabled people. More than any single welfare reform it is the combination of them all that is hitting our community like a slow-motion car crash. Here is the line up:

Employment and Support Allowance (ESA) was designed by Labour to reduce the bill for for Incapacity Benefit "by looking at what a person can do, not what they can't", in other words disqualifying a large proportion of claimants. In addition, financial support for many claimants who have worked and paid taxes is now limited to 12 months, even if they remain unfit to work. DLA, a benefit paid to cover extra cost of living with a disability, has been scrapped, to be replaced by Personal Independence Payments (PIP). PIP has been designed to disqualify 600,00 people and save over £2 billion. The annual increase in benefits has been capped at 1% instead of tracking inflation, which will further erode their value over time. From April 2013 the new "bedroom tax" on social housing tenants deemed to have surplus space hits disabled people who may require the extra room due to medical or care needs. At the same time the reduction in council tax benefits will apply to all poor people of working age in most local authorities, including those unable because of a disability or health condition to earn any extra money to cover the bill.

For disabled people with social care needs the picture is truly catastrophic. Cuts to benefits combined with a reduction in English local authority grants of 41.9% create the perfect storm when you consider that over 40% of those local authority budgets are spent on Adult Social Care services.

The Human Cost of the Cuts

Financial impoverishment is just one facet of the assault. Less easy to quantify is the human cost. The assault on our morale and personal resilience as charity members and trustees dates back to 2008 when Incapacity Benefit began to be replaced by Employment and Support Allowance (ESA). ESA is one facet of a punitive Back to Work regime.

GPs say the WCA is responsible for stress, deterioration in health and suicide in patients. Our own report based on a survey of our members for Professor Harrington's independent review backed up this experience. An illness like ME renders life threadbare. Sufferers face such a battle for day to day living - eating and washing - that they may manage just one small extra energy expense per week or month beyond surviving. Being able to access one of our social or therapeutic activities often provides that small but vital link with the world.

The reality of the welfare reforms is to take away even this. Since the horrors of ESA, with its presupposition of guilt, began our members are compelled into the exhausting and soul-destroying bureaucracy of proving their innocence. Life has become an unending cycle of frequent reassessments, lengthy appeals (increasingly without available representation); and demonstrating compliance to avoid sanctions. Where energy is a currency, community is no longer affordable for many of our members. "Sarah" is among our volunteers who are anxious about what they can contribute to the group because of the added burden of ESA on their health. She had been considering a membership secretary role requiring about 20 hours' work per month, but with her PIP assessment and ESA reassessment looming this year the financial safety net for her future feels too precarious to make any new commitments.

Others like "Michael" fear that they might be "found out" for using a computer or telephone for a few hours' per month, pronounced Fit to Work and have all their benefits stopped. This is not paranoia on their part. It is how the computerised Atos mind-set operates. This is what the DWP means when they boast of reforms based on "what a claimant can do, not what they can't".The other facet of this regime is "support" to come off sickness benefits and prepare for work. In the DWP handbook of medicine, sick
and disabled people either die or recover within twelve months. There is
no such thing as a long term or degenerative condition; just
malingering. By this logic, those judged not to be dying are given a
twelve month maximum prognosis of recovery and told to prepare for work.

It is a shock to most healthy people to discover that sick and disabled people placed in the "work related activity group" of ESA are included in the government's infamous Work Programme which authorises mandatory workfare and sanctions of up to 70% on benefits for those judged non-compliant. The ideology used to justify this barbarity is that work is the best cure for sickness or disability and sick people require motivation.

The Work Programme schemes which deliver this "support" have a success rate of just 0.9% for getting ESA claimants back to work. Most of our members dream of being well enough to go back to work and regain their former life. But the reality of ME/CFS is that, like many chronic conditions, recovery is slow, halted by relapse, or non-existent, and in some cases deterioration is the long term trend.

Our members lose sleep worrying about what the consequences will be if they are too ill to attend a mandatory interview or course. Will their advisers accept they are too ill or see them as "lying, thieving ba****ds" and dock their benefits? Mandatory work related activity is not a cure for ME. It is merely one extra demand on our scarce energy, even after we have proved to the DWP and Atos that we are sick and not lazy.

Conclusion - the cost to the community.

The survival of our charity is under threat as we battle these welfare reforms that undermine our capacity to support each other and govern our organisation. Our charitable activity has been diverted from securing the future of our therapeutic program to
supporting members in distress from the benefit changes, and lobbying the government on their behalf. We fear the worst is yet to come. In April the appeals reform bill takes effect meaning that people who dispute a Fit to Work decision will be left with no income at all if they are too ill to attend a Jobcentre regularly.Celebrated Big Society volunteers and demonised welfare dependents can be one and the same people. Yet managing these two identities at once as government policy defines them is leaving me and others on a knife edge.

As Richard Hawkes of the charity
Scope said recently: “Some people need benefits. Get over it.”

2 comments:

Sadly, I very much fear that the painful truths told here will make not a blind bit of difference to our abysmal Coalition government. What I hope, however, is that this piece of writing gets widespread publicity so that at least the electorate gets to appreciate the hypocrisy of that glib Big Society sermonising.